Katarina Nechvatal: Community Ambassador
Cystic fibrosis began to shape my life in 2008 when my husband, Shaun, and I had our third child, Dominic. He was the first child in Saskatchewan to be screened positive through the newborn screening program. Our fifth child, Benjamin, was born in 2016 and also has CF. While each day in our family is affected by the regime we follow for CF care, we do all the things that a “normal” family does.
Along with his older sisters Eva and Anika, Dominic plays competitive soccer and basketball year round and takes piano and swimming lessons. He loves school, is way too smart for his age, and is the best joke teller I know. Benjamin might be the littlest one in our family, but his exuberance for life is never unnoticed.
Much of our learning about caring for children with CF has come from our clinic team and our own reading; yet lived experience and lots of trial and error has really developed Shaun and me as parents who are dedicated to giving our children the very best care we can. We are constantly learning, and CF has impelled our family to grow in ways we’d never imagined.
It is a privilege to have the opportunity to connect with others who are curious about the experiences of family life with cystic fibrosis beyond what can be found in manuals and case studies. I believe it is important to be candid about both the challenges and the gifts that come when a loved one lives with CF.